So you may have been wondering if new Autism Speaks president Liz Feld would be moving away from any of the "autism is a horrible tragedy because of what it does to the neurotypical people in the family" rhetoric that has made autistic people hate the organization which claims to speak for us.
The answer is no:
Feld, a longtime resident of Larchmont and a graduate of Mamaroneck High School, said she had seen firsthand the toll the diagnosis can take on a family. She said she had watched a close friend’s family struggle with a child’s condition for 24 years.
“He’s on the severe end of the spectrum and is nonverbal,” Feld said. “The families have a crippling financial burden, the insurance doesn’t pay for many of the services needed, and it can be exhausting and emotionally draining. They go through a grieving period for all the hopes and dreams they had for their child.”
I've spent a lot of time learning about Liz Feld, the new president of Autism Speaks, since Bob and Suzanne Wright made the surprising announcement that she was replacing Mark Roithmayr, and I've made the following observations:
1) She is an extremely impressive person, as her biography from the announcement makes clear:
Feld has devoted much of her career to public policy and strategic communications. She served in the White House from 1984-1987, as public affairs specialist in the White House Office of Management and Budget and press officer for Vice President George H.W. Bush during the Reagan administration. She was director of news information at ABC News and senior vice president for communications for Nickelodeon. Prior to that, she worked at Robinson, Lake, Lerer & Montgomery, a strategic communications and public affairs firm.
In September 1999, Feld helped launch the Million Mom March, a national grass-roots organization established to promote sensible gun safety legislation. She is a member of Mayors Against Illegal Guns, co-founded by New York Mayor Michael Bloomberg and Boston Mayor Thomas Menino. Feld also serves as a board member of New Yorkers for Growth, a leading New York State fiscal reform group.
2) She does not appear to have any particular personal interest in autism.
3) She has worked mostly with people who have generally opposed government spending on things like health care and education. This concerns me greatly because I think cuts to those programs at the state and federal level pose the single greatest threat to autistic people and their families. I think it is vital that Autism Speaks start organizing members to fight cuts to the sorts of programs that Ms. Feld has not usually been in favor of funding. Her failed campaign for State Senate in 2008 was based around lowering taxes. She attacked Senator Kristen Gillibrand for supporting the Affordable Care Act.
4) She has a bad record when it comes to empathizing with people who are not rich and white. Feld was mayor of Larchmont, New York, when the county it is in was forced to settle a discrimination lawsuit because officials there "never tried to overcome barriers to fair housing that are based on race or based on municipal resistance to affordable housing." Her comments at the time indicated that she failed to take the issue seriously at all:
Larchmont, NY mayor Liz Feld says they're not small-minded, just a small town.
"We're a one-square-mile village, we're particularily small. Which makes it very challenging. We can't find housing for our own workforce."
And she continues to rail against the idea that communities like Larchmont should need to do anything to be more friendly to minorities.
I would argue that under-diagnosis of minority populations is a huge problem for autism in the United States. I wish the new president of our most influential advocacy group did not have a history of ridiculing similar issues in the past.
5) She's another TV person. Feld has worked at both ABC and Nickelodeon and her husband is still a television executive. As I wrote recently while explaining that, although Autism Speaks continues to improves, it is still a pretty negative force:
You always have to remember that Autism Speaks was started by TV people-- this is one of the reasons they have been so successful in dominating the media. But TV people have weird, and sometimes dangerous ideas about science. Before it became part of Autism Speaks, Peter Bell worked for Cure Autism Now, an organization originally funded by Hollywood producer Jon Shestack, who started it because he believed movie money could hurry science:
“I work in the movie business,” Shestack says. “I know you can hurry anything. You put more guys on the job, you spend more money. You just can’t do it for free.”
That attitude-- that you can get the result you want just by spending more-- is endemic in both television and the movies. And it has been part of the culture of Autism Speaks since founder and former NBC executive Bob Wright hired former NBC executive Alison Singer to be its first employee.
In television, you win by getting people's attention and getting them to agree with you. In science, you win by being right. When you start off with a wrong idea, like autism is a disease, it ultimately does not matter that much how much money you spend. The most expensive car will never get you to the right destination if you drive it down the wrong road.
Yesterday, Autism Speaks published a blog post in which Loving Lampposts director Todd Drezner asks readers to listen to what autistic people have to say:
The first thing you see when you come to this website are the words “Autism Speaks. It’s time to listen.” And as the autism numbers continue to rise, there’s little doubt that we need to understand as much as we can about autism.
But who really speaks for autism? Parents, scientists, therapists, and even the occasional celebrity are well represented in the media conversation about autism. Ironically, the voices most often missing from these discussions are those of autistic people themselves. I made my documentary, Loving Lampposts: Living Autistic, partially to help bring those underrepresented autistic voices into the conversation.
It's a moving and intelligent piece, and it's important that Drezner is getting his message to this particular audience.
And it's further evidence that Autism Speaks is improving that they are including his voice.
Do I support Autism Speaks?
Am I likely ever to do so?
But Autism Speaks is powerful and important. Making it better is important. And saying thank you when they do something right is important, too.
Thank you, both to Todd and to Autism Speaks.
A freezer at McClean Hospital malfunctioned in May, damaging about one-third of the world's largest collection of frozen autistic brains, Autism Speaks' Autism Tissue Program:
“This was a priceless collection,’’ said Dr. Francine Benes, director of the Harvard Brain Tissue Resource Center, where the brains were housed. “You can’t express its value in dollar amounts,’’ said Benes, who is leading one of two internal investigations into the freezer failure.
The damage to these brains could slow autism research by a decade as the collection is restored, said Carlos Pardo, a neuropathologist and associate professor of neurology at Johns Hopkins University.
And it's nice that Tommy Hilfiger is being open about the fact that his daughter and stepson both have autism. It would be even nicer if he wasn't reading from an Autism Speaks approved script while doing so:
“The government is not involved in it. People aren’t donating enough money. There’s not enough research,” he said. “There’s no cure. It needs help, so we’ve become involved.”